View Single Post
Old 10-11-2012, 04:13 PM
restorativepose's Avatar
restorativepose restorativepose is offline
Junior Member
 
Join Date: May 2012
Location: WI
Posts: 80
10 yr Member
restorativepose restorativepose is offline
Junior Member
restorativepose's Avatar
 
Join Date: May 2012
Location: WI
Posts: 80
10 yr Member
Default Name of doc good with seronegative MG?

If you have a name, please post or PM me.

I've been in an almost year long journey to get diagnosed. I have seen four neuros, all who say my muscle weakness symptoms act like MG but I fail to test strikingly positive for it.

I have a huge response to Mestinon, even a low dose. When I go without it, my breathing and voluntary muscles become extremely weak.

My AChR is normal, as is my MuSK. My SFEMG was "normal", as performed by a local (Minneapolis) MG expert. I've had two abnormal EMG's, one on the face and one on the arm.

I've also seen a rheumatologist, who tested for glycogen storage disorder and polymyositis.

Like anyone would be, and as a full time working mom of two little boys, I'm tired of this. I feel about 20% of myself, yet no docs can diagnose it. I am near Mayo clinic but hear from others that they're not so good with seroneg MG. Running out of places to go... the huge response to Mestinon, along with feeling better after much rest, is what keeps me considering MG.

Thank you friends,
Tricia
__________________
.................................................. ...........
37yo, clinically diagnosed MG Aug 2012
Started Mestinon June 2012
*mestinon my wonder drug!*
.................................................. .............
restorativepose is offline   Reply With QuoteReply With Quote